Accessing health care is particularly pertinent to European rare disease patients, who often have limited resources of care and expertise in their region. With over 7,000 rare diseases identified to date, it is not possible for each EU country to develop expert care and treatment services for every disorder. Thus, the rare disease patient - perhaps more than any other EU citizen - needs to be able to access medical expertise where it exists. The European Commission in July adopted a proposal for a directive on the rights of patients accessing cross-border healthcare. The proposal tackles the complex issues of reimbursement for care obtained in member states and the coordination of social security schemes; mutual recognition of professional qualifications; discrimination; and the need for a community framework for the protection of personal data. The proposal next has to go through a co-decision process involving the Council of Ministers and the European Parliament. If the readings are not completed before June 2009, the process will have to recommence upon the election of the new parliament rapporteurs. Once a decision is taken, the member states will have one year to implement the directives of the proposal.
Source : Orphanet
Ichthyosis Awareness Month 2019 : more than ever needed